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Walden Dissertations and Doctoral Studies Walden Dissertations and Doctoral StudiesCollection
2015
A Mixed Method Study of Diagnostic and
Adaptive Functioning Challenges in African
American Preschool-Aged Children with Autism
Spectrum Disorders
Douglene Jackson
Walden University
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Walden University
College of Education
This is to certify that the doctoral dissertation by
Douglene Jackson
has been found to be complete and satisfactory in all respects, and that any and all revisions required by
the review committee have been made.
Review Committee
Dr. Phyllis LeDosquet, Committee Chairperson, Education Faculty Dr. Christine Dawson, Committee Member, Education Faculty
Dr. Asoka Jayasena, University Reviewer, Education Faculty
Chief Academic Officer Eric Riedel, Ph.D.
Walden University 2015
A Mixed Method Study of Diagnostic and Adaptive Functioning Challenges in African American Preschool-Aged Children with Autism Spectrum Disorders
by
Douglene Jackson
MOT, Nova Southeastern University, 2002 BHS, University of Florida, 1998
Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of
Doctor of Philosophy Education
Walden University December 2015
Children with Autism Spectrum Disorder (ASD) are known to experience performance and participation challenges, with early diagnosis being critical for improved outcomes. Children from ethnic minority backgrounds tend to receive their diagnoses later, even when symptomatology is similar. This mixed methods study explored symptom severity, functional difficulties, and age at diagnosis for ASD and to describe the functional
challenges encountered by preschool-aged children with ASD of African American descent. The International Classification of Functioning, Disability, and Health along with the Model of Human Occupation were the theories used for this study to
conceptualize functional challenges and other potential factors. Research questions addressed symptom severity, degree of functional challenges, and age of diagnosis, and to gather family perspectives regarding functional challenges for preschool-aged children of African American descent. Data consisted of subpopulation responses from the 2009-2010 National Survey for Children with Special Healthcare Needs (N = 224) and locally-conducted interviews with parents (N = 3). No significant relationships were found using general linear model between age at diagnosis and symptom severity or degree of
functional challenges. Qualitative themes included the diagnosis process, routines and transitions, communication, family and home environment, and school and community environments. Educators and health care providers need to enhance screening for early signs of ASD and consider racial and cultural implications related to performance and participation challenges. Social change implications include the development of effective and targeted awareness campaigns and improved diagnostic and intervention services for children with ASD from minority backgrounds and their families.
A Mixed Method Study of Diagnostic and Adaptive Functioning Challenges in African American Preschool-Aged Children with Autism Spectrum Disorders
by
Douglene Jackson
MOT, Nova Southeastern University, 2002 BHS, University of Florida, 1998
Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of
Doctor of Philosophy Education
Walden University December 2015
I would like to thank the community partners and families who participated in the interviews for this study. Without their help and willingness to take time and energy to share their stories, this study would not have been possible. I also thank my committee members and all of the faculty who have been there to offer advice, recommendations, and encouragement that were instrumental in helping me complete this journey. Finally, I would like to thank all of my mentors, family, friends, and colleagues for their support.
i
Table of Contents
List of Tables ...v
List of Figures ... vi
Chapter 1: Introduction to the Study ...1
Introduction ...1
Background ...1
Autism and Early Diagnosis ...2
Problem Statement ...4
Purpose of the Study ...5
Research Questions and Hypotheses ...6
Theoretical and Conceptual Framework ...7
Nature of the Study ...9
Quantitative Component ...9
Qualitative Component ...10
Definitions...11
Assumptions ...13
Scope and Delimitations ...13
Limitations ...14
Significance...16
Summary ...16
Chapter 2: Literature Review ...18
ii
Theoretical Framework ...19
Model of Human Occupation (MOHO) ...20
International Classification of Functioning, Disability, and Health (ICF) ...23
Overview of Autism Spectrum Disorders ...25
Diagnostic Criteria for ASD ...26
Diagnostic Assessment of ASD ...28
Age of ASD Diagnosis and Disparities ...29
ASD and Adaptive Functioning Challenges in Early Childhood ...31
Overview of Adaptive Functioning Challenges ...31
ASD and Adaptive Functioning Challenges inPreschool-Aged Children ...37
ASD and Adaptive Functioning Challengesin African American Preschool-Aged Children ...39
Summary ...41
Chapter 3: Methodology ...43
Introduction ...43
Setting ...43
Research Design and Rationale ...44
Role of the Researcher ...46
Methodology ...47
Quantitative Participant Selection...48
Qualitative Participant Selection...49
Quantitative Instrumentation ...50
iii
Data Collection Procedures ...52
Quantitative Data Analysis Plan ...54
Qualitative Data Analysis Plan ...55
Threats to Validity ...55 Issues of Trustworthiness ...57 Ethical Procedures ...57 Summary ...58 Chapter 4: Results ...59 Introduction ...59 Setting ...59 Demographics ...60 Data Collection ...62 Data Analysis ...63 Results ...65
Quantitative Data Results ...65
Qualitative Data Results ...69
Evidence of Trustworthiness...80
Summary ...81
Chapter 5: Discussion, Conclusion, and Recommendations ...83
Introduction ...83
Interpretation of Findings ...84
Age at Diagnosis ...85
iv
Adaptive Functioning Challenges ...87
Limitations ...88
Recommendations ...89
Implications...91
Conclusion ...94
References ...96
Appendix A: Data Use Agreement ...114
Appendix B: Letter of Cooperation ...116
v List of Tables
Table 1. Qualitative Data: Child’s Current Age and Age at Diagnosis ... 61 Table 2. Quantitative Data: General Linear Model Results ... 69
vi List of Figures
Figure 1. Severity level of ASD reported by parents on the NS-CSHCN...66 Figure 2. Degree of functional challenges reported by parents on the NS-CSHCN...67
Chapter 1: Introduction to the Study
Introduction
Children from ethnic minority backgrounds, such as African American and Hispanic, generally receive their diagnosis of Autism Spectrum Disorder (ASD) later than non-minority children, typically after the age of four (Daniels & Mandell, 2014; Valicenti-McDermott, Hottinger, Seijo, & Shulman, 2012). As a result, they may miss critical windows associated with neuroplasticity where early intervention would be most beneficial for acquiring adaptive functioning skills (Berger et al., 2013; Dawson, 2008). Further research is needed to address these disparities and gain a better understanding of the factors that may influence later presentation of symptomology and diagnosis of children of African American descent. Below is an overview of a mixed methodology study where factors associated with disparities in the diagnosis of adaptive functioning challenges in preschool-aged children of African American descent from were explored. A background for the study is provided, followed by a description of the problem and purpose of the study. Additionally, the research questions, theoretical framework, nature of the study, definitions, assumptions, scope and delimitations, and limitations are
discussed. The chapter concludes with the significance of the study and a summary.
Background
As more assessments have been made available and because early intervention can be critical for achieving positive outcomes, children are being diagnosed at earlier ages with ASD (Matson, Rieske, & Tureck, 2011). In spite of early diagnosis, children from ethnic minority backgrounds have been found to receive their diagnosis later than
children from other backgrounds (Daniels &Mandell, 2014; Valicenti-McDermott et al., 2012). Additionally, children with ASD of African American descent have not been included in a sufficient number of research studies to provide a perspective on the
influence race and culture may have on adaptive functioning (Jang, Matson, Cervantes, & Goldin, 2013; Mandell et al., 2009). Although a later diagnosis of ASD in children from African American backgrounds has been noted, research has not been conducted to explore influential factors beyond maternal education and socioeconomic status. The purpose of this mixed methods study was to further explore the disparities in age of diagnosis and provide a description of the functional challenges encountered by African American preschool-aged children with ASD.
Autism and Early Diagnosis
The diagnosis of ASD continues to increase, with the current prevalence being 1 in 66 children (Centers for Disease Control and Prevention [CDC], 2014). As diagnostic procedures continue to improve, children are being identified earlier, with a diagnoses made as early as 2 years of age noted to remain stable (Chawarska, Klin, Paul, Macari, & Volkmar, 2009; Daniels & Mandell, 2014; Kleinmanet al., 2008; Sutera et al.,
2007).Identification of infants at risk for ASD have also been made prior to 12 months of age, with increasing success for predictability (Flanagan, Bauman,& Landa, 2012; Samango-Sprouse et al., 2015). The core deficits related to ASD symptomology are reportedly similar, with subtle differences noted across individuals from different backgrounds (Grinker, Yeargin-Allsopp, & Boyle, 2011; Cuccaro et al., 2007). Overall, individuals with ASD present performance and participation impairments as a result of difficulties with adaptive functioning, such as communication, social interaction,
behavior challenges, and sensory processing disorders (Brock et al., 2012; Lane, Molloy, & Bishop, 2014; Kanne et al., 2011; Perry, Flanagan, Geier, & Freeman, 2009).
However, children from minority backgrounds have been found to be misdiagnosed or receive their diagnosis at a later age than non-minority children (Burkett, Morris,
Manning-Courtney, Anthony, & Shambley-Ebron, 2015; Ennis-Cole, Durodoye, & Harris, 2013; Valicenti-McDermott et al., 2012).
With early identification and assessment practices, children with ASD can have access to interventions that may ameliorate the symptoms of autism and empower families to address the associated challenges of parenting a child with a disability (Estes et al., 2009). However, early diagnosis and service utilization may vary due to numerous factors, such as socioeconomic status, availability and coverage of services, awareness and acknowledgement of developmental delays, and comfort level with practitioners based on previous encounters with health and educational professionals (Daniels & Mandell, 2014; Ennis-Cole et al., 2013). In spite of awareness campaigns and early intervention initiatives, children with ASD from minority backgrounds are diagnosed later and face an increased challenge as a result of delays in diagnosis (Ennis-Cole et al, 2013; Mandell et al., 2009; Valicenti-McDermott et al., 2012).
Early diagnosis is important for addressing the functional difficulties encountered by individuals with ASD as there are optimal age windows for the consolidation of developmental skills, and therefore reaping the full benefits of early intervention can be critical for a chance at improved outcomes and quality of life (Berger, Rohn, & Oxford, 2013; Dawson, 2008). Although some researchers have proposed possible factors associated with delays in diagnosis such as maternal education, socioeconomic status,
and access to resources, there is little research that explores this in detail (Daniels & Mandell, 2014; Ennis-Cole et al., 2013; Irvin, McBee, Boyd, Hume, & Odom, 2012; Mandell et al., 2009). More research is needed to further identify associated factors with ASD diagnostic delays, such as those of African American descent, as well as to explore the functional challenges of ASD that may be associated with race and culture.
Problem Statement
There have been numerous initiatives such as training opportunities for
professionals and media campaigns for the public to increase awareness of the early signs and associated symptoms of ASD (American Psychiatric Association [APA], 2013a; CDC, 2014). With the update to the Diagnostic and Statistical Manual of Mental Disorders-5th Edition (DSM-5), new diagnostic criteria were established and symptom
severity is now provided with a diagnosis of ASD (APA, 2013b). According to the new criteria, individuals with ASD must present with challenges related to the following: (a) social interaction and communication, and (b) restricted and repetitive behaviors, activities, and interests. These symptoms must present during early childhood and
collectively impair functional participation and performance. Although the symptoms are defined similarly across individuals, those from minority backgrounds have been noted to often receive their diagnoses at later ages (Ennis-Cole et al, 2013; Mandell et al., 2009; Valicenti-McDermott et al., 2012).
Information regarding the relationship between racial and cultural influence and lived experiences of individuals to a diagnosis of ASD is scarce. Researchers have proposed various factors that may contribute to the age that individuals from minority backgrounds are diagnosed with ASD. Commonly identified in these proposed factors
are socioeconomic status, maternal education level, access to quality care, and service utilization (Daniels & Mandell, 2014; Ennis-Cole et al., 2013; Irvin et al., 2012; Mandell et al., 2009). Additionally, subtle differences have been noted with the presentation of symptomology, with more significant concerns reported regarding socialization, communication, and behavior challenges (Horovitz, Matson, Rieske, Kozlowski, & Sipes, 2011; Jang, Matson, Cervantes, & Goldin, 2013; Mayes & Calhoun, 2011; Tek & Landa, 2013). Delays in diagnosis pose significant challenges to accessing and utilizing early intervention services during the preschool years. As this is a critical period in early childhood development, delayed diagnosis can compromise the opportunity for improved outcomes (Berger et al., 2013; Dawson, 2008; Irvin et al., 2012). Few studies exist that include African Americans as a representative sample and address the presentation of symptoms associated with ASD as well as concomitant disparities in early childhood diagnosis (Jang et al., 2013; Mandell et al., 2009). To gain a better understanding of the implications that race and culture may have on delays in ASD diagnosis, more research is needed that explores the functional participation and performance challenges of
preschool-aged children of African American descent.
Purpose of the Study
The purpose of this mixed methods study was to explore symptom severity, functional difficulties, and age at diagnosis for ASD, as well as describe the functional challenges encountered by preschool-aged children of African American descent with ASD. The intent was to explore factors related to later diagnosis of ASD in preschool-aged children of African American background at a national level, as well as describe adaptive functioning challenges to performance and participation from a local
perspective. Researchers have documented delays in age of ASD diagnosis for minority children, as well as variance in the performance and participation challenges they face regarding performance and participation (Tek & Landa, 2012).However, few have provided information on a national level (CDC, 2011a). Additionally, little research is available that has included African Americans as the primary sample to study the
influence of race and culture on symptom presentation and service utilization (Cuccaro et al., 2007; Sell, Giarelli, Blum, Hanlon, & Levy, 2012).Using a mixed methods approach, I investigated the relationship between race and diagnostic disparities based on parental report of symptom severity and adaptive functioning challenges from a national data set. Additionally, I explored adaptive functioning difficulties of preschool-aged children of African American descent with ASD from a qualitative perspective using interviews that were conducted locally. With children from minority backgrounds being diagnosed with ASD later than those from other backgrounds, it is critical to explore possible influences that may affect timely diagnosis.
Research Questions and Hypotheses
Previous researchers have identified that individuals from minority backgrounds often receive a diagnosis of ASD later than non-minority children. Therefore, the aim of this study was to gain insight into possible factors related to this disparity, as well as to understand the lived experiences from the perspective of parents of preschool-aged children of African American descent with ASD. The research questions for this mixed method study were as follows:
2. How does the degree of reported functional challenges relate to age of diagnosis?
3. How do parents describe adaptive functioning challenges related to performance and participation?
It has been hypothesized that symptom severity and degree of functional challenges may be related to age of ASD diagnosis for children of African American descent. The dependent variable for this study was age at diagnosis, with parental report of severity of ASD and degree of functional difficulties being the independent variables. The null hypotheses are that age of diagnosis is not influenced by either ASD symptom severity (H01) or adaptive functioning challenges (H02). In turn, the alternate hypotheses
are as follows: age at diagnosis is influenced by ASD symptom severity (Ha1) and/or
degree of functional challenges (Ha2). I hoped to gain an understanding of the
relationship that symptom severity and functional challenges may have with delays in diagnosis through the use of a general linear model, as well as qualitatively via parental perspectives regarding adaptive functioning challenges in preschool-aged children with ASD.
Theoretical and Conceptual Framework
The Model of Human Occupation (MOHO) is a theoretical framework where contributory factors that either support or inhibit the different ways in which people participate in activities are described (Kielhofner, 2008). Kielhofner (2008) posited that in addition to the social environment, three components that are dynamically interrelated influence participation: volition, habituation, and performance capacity. Volition refers to individual motivation, habituation is related to patterns and routines, and performance
capacity depicts the various skills and abilities inherent to the individual that may influence participation. Culture also is said to play a role in participation and
performance patterns. Together, Kielhofner proposed that understanding this dynamic interplay could help identify the different reasons why an individual may be successful or limited in their ability to perform and participate in daily activities.
Similarly, the World Health Organization (WHO) has established the
International Classification of Functioning, Disability, and Health (ICF), which is based on a biopsychosocial model and can be used as a framework to conceptualize functioning (WHO, 2002). According to ICF, functioning is influenced by a variety of factors that determine one’s health and quality of life. Disability and function are based on the interaction between individual and contextual factors, all which can support or hinder how an individual is able to perform and participate in various settings (WHO, 2013). As such, ICF has been used internationally to classify and study disability in various
countries. It serves as a conceptual framework for describing disability across the lifespan and cultures.
The intent of this study was to explore the relationship race and culture may have with adaptive functioning and early diagnosis of ASD in preschool-aged children of African American descent. Using the theoretical framework of Kielhofner’s (2008) MOHO, as well as the tenets proposed in ICF, functional challenges based on parental report could be explored in minority populations to elucidate the disparities and
functional challenges reported. Through applying these concepts to this study, I hoped that insight could be gained into the various individual and contextual factors that parents of preschool-aged children with an ASD identification face in regard to their child’s
functional performance and participation. In addition, I hoped to further understanding of how symptom severity and degree of functional challenges with ASD children may be associated with delays in diagnosis. A more thorough explanation of the major tenets of MOHO and ICF as they relate to this study are provided in the next chapter.
Nature of the Study
Mixed methodology is a research approach that allows for the collection of quantitative and qualitative data with the aim of providing a better understanding of a particular phenomenon (Creswell, Klassen, Plano Clark, & Smith, 2011; Creswell & Plano Clark, 2011). This approach can be beneficial to explore concepts where unexpected results are found from quantitative studies, as well as investigate
sociocultural phenomenon (Creswell, Klassen, Plano Clark, & Smith, 2011; Klingner & Boardman, 2011). A mixed methods approach was used to gain insight into the
diagnostic disparities related to preschool-aged children of African American descent with ASD and further explore the adaptive functioning challenges reported by parents. Information from parents who previously completed a national survey was analyzed. Additionally, information was gathered locally through interviews regarding preschool-aged children with ASD of African American background to depict the lived challenges and functional difficulties based on parental report. Mixed methodology can be used to first analyze a national data set and then explore local perspectives.
Quantitative Component
Quantitative measures were used through reviewing responses provided by parents of children with special needs on the2009-2010 National Survey of Children with Special Health Care Needs (CDC, 2011a). During the administration of the National
Survey of Children with Special Health Care Needs (NS-CSHCN), parents provided responses to various questions to determine types of disabilities and degree of
impairment. Questions of interest to this study included whether age at diagnosis had any relationship with symptom severity and adaptive functioning challenges. The dependent variable for this study was age at diagnosis, with independent variables consisting of parental report of severity of ASD and degree of functional difficulties. The null hypotheses are that age of diagnosis is not influenced by either ASD symptom severity (H01) or adaptive functioning challenges (H02). In turn, the alternate hypotheses are as
follows: age at diagnosis is influenced by ASD symptom severity (Ha1) and/or degree of
functional challenges (Ha2).Data from the public 2009-2010 NS-CSHCN dataset were
analyzed using descriptive statistics and regression analysis, including general linear model, to answer the research questions.
Qualitative Component
Qualitative measures were employed through conducting interviews with parents of preschool-aged children with ASD of African American backgroundto depict adaptive functioning challenges. Of particular interest were the answers to the following question: What adaptive functioning challenges related to performance and participation are
reported by parents of preschool-aged children with ASD of African American
background. Parents of African American background who had a child with a diagnosis of ASD at 6 years of age or younger were solicited through a recruitment letter provided to local community pediatric therapy service providers, such as therapy clinics and behavioral intervention companies. Parents were interviewed and responses being coded to determine major themes and concepts. Conducting interviews with at least four local
parents was thought to allow for a first-hand account of challenges encountered and an opportunity to expand upon the questions posed in the NS-CSHCN. Through
triangulation, I hoped that this information from the interviews would add to the data gathered from the quantitative component. A more detailed description of the
quantitative and qualitative components of this explanatory sequential mixed method study can be found in Chapter 3.
Definitions
Adaptive functioning: Skills necessary for an individual to function in everyday activities, such as communication, social interaction, self-help, and overall independence with age-appropriate tasks (Perry et al., 2009; Paul et al., 2014).
Biopsychosocial: A useful model of disability. ICF is based on this model;it is one that yields an integration of medical and social aspects of disability. ICF provides, by this synthesis, a coherent view of different perspectives of health: biological, individual, and social. (WHO, 2002, p. 9).
Culture: “Beliefs and perceptions, values and norms, customs and behaviors that are shared by a group or society and are passed from one generation the next through both formal and informal education; within most cultures there are also a variety of subcultures” (Kielhofner, 2008, p. 95).
Environmental factors: Social attitudes, architectural characteristics, legal and social structures, as well as climate and terrain (WHO, 2002, p. 10).
Functioning: “All body functions, activities, and participation” (WHO, 2002, p. 2)
Habituation: Organizational process for occupation due to recurrent patterns, including personal roles, routines, and habits (Boyer et al., 2008; Kielhofner, 2008; Model of Human Occupational Clearinghouse, 2013)
Occupation: “the doing of work, play, or activities of daily living [such as self-care and self-maintenance] within a temporal, physical, and sociocultural context” (Kielhofner, 2008, p. 5)
Occupational participation: Engaging in work, play, or activities of daily living that are part of one’s socio-cultural context and that are desired and/or necessary to one’s well-being (Kielhofner, 2008, p. 101)
Participation: “Involvement in a life situation” (WHO, 2002, p. 10). Performance: The ability to do things based on an individual’s mental and
physical makeup and personal experience (Boyer et al., 2008; Kielhofner, 2008; Model of Human Occupational Clearinghouse, 2013)
Personal factors: Gender, age, coping styles, social background, education, profession, past and current experience, overall behavior pattern, character, and other factors that influence how disability is experienced by the individual (WHO, 2002, p. 10)
Skills: Observable, goal-directed actions that a person uses while performing (Kielhofner, 2008, p. 109).
Volition: Motivation for occupation, being comprised of individual values, interests, and personal perception of being effective at a task (Boyer et al., 2008; Kielhofner, 2008; Model of Human Occupational Clearinghouse, 2013)
Assumptions
Although constructed around effective methodological approaches for mixed methods studies, this study presents assumptions. Information related to age at diagnosis in relation to severity of ASD and degree of functional performance and participation challenges were obtained from the NS-SCSHCN(CDC, 2011a), as well as from interviews with at least four local parents. It was assumed that the participants in the study had been and were credible in their responses, being open and honest in answering the questions posed to them (Plano Clark & Creswell, 2008; Teddlie & Tashakkori, 2009).
Scope and Delimitations
The focus of this study was on diagnostic disparities related to age at diagnosis, as well as challenges reported in preschool-aged children with ASD of African American background. Researchers have identified that the diagnosis of ASD can be made and considered to be stable as early as two years of age. However, children of minority background often receive their diagnosis at a later age than non-minority children,
resulting in delays in access to early intervention services that could have led to improved functional outcomes (Gourdine, Baffour, & Teasley, 2011; Mandell et al., 2009).
Additionally, differences have been noted in the presentation of behavioral and communication deficit symptomology in children of African American descent with ASD, as well as perceptions of symptoms based on parental report (Horovitz et al., 2011; Jang et al., 2013; Mayes & Calhoun, 2011; Tek & Landa, 2013). To explore these concepts further, the population of focus in this study was African American preschool-aged children6 years of age or younger with a reported diagnosis of ASD.
For the qualitative interviews, I chose parents of preschool-aged children between the ages of 2 and 6 years old. Individuals of minority backgrounds, particularly African American, are seldom included to a degree that would result in a large sample that is representative of the general population (Carr & Lord, 2013; Cuccaro et al., 2007; Gourdine & Algood, 2014; Sell et al., 2012). The specific focus was on recruiting parents of African American descent who in responding to the survey and recruitment letter identified their child as having a current diagnosis of ASD. Thus, the scope of this study included exploring potential causes of late diagnosis, such as reported severity of autism and significance of functional challenges. Quantitative means were utilized to explore these constructs from a national dataset using telephone contact. This limited the generalizability of the results to the larger population, as variances in family resources may have affected either access to having a landline or availability when the call was placed. Additionally, using interviews conducted with local parents of African American background for the qualitative component of this study further impeded the transferability of findings to the larger population due to purposeful sampling and the use of a small number of local parents from a southern state in the United States.
Limitations
In using an existing national dataset from the 2009-2010 NS-SCSHCN, responses were already provided and interviews were conducted by multiple interviewees through telephone calls. Although a script was used for the interviews, including further
instructions for explanations to clarify questions, limitations still exist with this approach. As a result, the information obtained from the telephone interviews may be representative of only those participants on a national level who possessed a landline or cellular phone
numbers. In addition, responses may be confined to individuals who were available during the time of the call and willing to complete the survey at that moment.
The interview used for the NS-SCSHCN as well as the assessments used for the qualitative component of this study, had adequate construct validity, measuring what they were designed and developed to assess (Creswell & Plano Clark, 2011; Teddlie &
Tashakkori, 2009). The information regarding the validity of these measures is provided in a subsequent chapter. However, information obtained through interviews is subjective, relying solely on parental report. As a result, the credibility of the information obtained may be questioned because of subjectivity. With the NS-SCSHCN survey, interviewers attempted to clarify responses through expansion of questions in accordance with the script. Following the interviews, member checking was used in an attempt to clarify responses, which has been reported to be effective at improving validity (Creswell & Plano Clark, 2011; Fielding, 2012).
Regarding the mixed method design of this study, quantitative measures were used to analyze the survey data, with qualitative techniques employed with an interview-based design. Participants in the NS-SCSHCN survey had no previous relationship with those conducting the interview and a script was used to variance in the questions posed. With the interviews, biases may have existed in regards to my previous experience working with children from various backgrounds with ASD. As a result, purposeful sampling was utilized to select parents of preschool-aged children from African
American background in the southern United States who had no pre-existing awareness of or relationship with me. Additionally, previously standardized measures with closed and open-ended questions were utilized for the interview. Triangulation of data from
quantitative and qualitative assessments completed during the study was used to gain a global picture of the adaptive functioning challenges experienced by the parent
participants who were selected for the quantitative and qualitative interviews. Through these efforts, it was hoped that biases were reduced and the validity of the results were not compromised throughout the conducting and analysis components of this study.
Significance
Through this research study, positive social change is promoted by revealing the perspective of parents of preschool-aged children of African American descent with ASD regarding diagnostic disparities and the performance and participation challenges their children face. The aim was to provide a large-scale picture of the age at diagnosis in relation to reported symptom severity and functional challenges, as well as a description of adaptive functioning challenges based on interviews with local parents of pre-school aged children with ASD. Various factors may impede early diagnosis, including parental concern related to developmental challenges, socioeconomic status, maternal education, and availability of resources in the area where the family resides (Daniels & Mandell, 2014; Ennis-Cole et al., 2013; Irvin et al., 2012; Mandell et al., 2009). Information obtained from this mixed methods study may be useful to guide assessment practices and intervention approaches in home, community, and school settings to promote improved early diagnostic practices and access to early intervention services for minority children with ASD.
Summary
Early intervention services are critical for improved outcomes in children with ASD (Boyd, Odom, Humphreys, & Sam, 2010; Irvin et al., 2012). However, receiving a
diagnosis later in life limits the opportunity for access to early intervention in a timely manner. Researchers have indicated that children from minority backgrounds receive their diagnosis later than non-minority children, which in turn impedes utilization of early intervention services for improved functional outcomes (Ennis-Cole et al., 2013;
Gourdine et al., 2011; Mandell et al., 2009; Mandell et al., 2010; Valicenti-McDermott, et al., 2012). The exploration of disparities in age at diagnosis and factors related to
adaptive functioning difficulties in minority populations is scarce in the current literature (Daniels & Mandell, 2014; Sell et al., 2012). Thus, the aim of this mixed methods study was to explore diagnostic delays in African American preschool-aged children with ASD through analysis of an existing national dataset, as well as depict the adaptive functioning challenges of preschool-aged children of African American background based on parental interviews. Chapter 2 includes a review of the current literature regarding ASD, with a focus on symptomology, diagnostic practices, and presentation in the African-American population.
Chapter 2: Literature Review
Introduction
Individuals with Autism Spectrum Disorders (ASD) present with core deficits in the areas of communication, social participation, behavior, and sensory processing. As a result, families of individuals with autism spectrum disorder are faced with many
challenges due to difficulties with functional performance and participation in everyday activities. Recent studies have explored these participation patterns and functional impairments in childhood and adolescence. However, few studies have been published exploring the relationship between the severity of one’s disorder on and the functional performance and participation capacities of preschoolers (Paul et al., 2011; Perez-Robles, 2009). Although some assessments may have previously considered severity level, the reclassification of ASD in the revised Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) now requires severity level specifications. Additionally, there is a lack of reporting of performance and participation challenges from the
perspectives of minorities such as African Americans, where the influence of cultural, societal, and socioeconomic differences that may affect those factors have been described.
The purpose of this mixed methods study was to explore symptom severity, functional difficulties, and age at diagnosis for ASD children, particularly functional challenges encountered by preschool-aged children with ASD from African American backgrounds. The review of literature discussed in this chapter covers recent research topics related to adaptive functioning challenges of children with ASD with a primary focus on toddlers and children from African American backgrounds. Included are
articles from peer-reviewed journals, books, and resources obtained from a variety of electronic databases, including those completed within the past five years, and related seminal literature. Databases used for this review available through Walden University’s library and other professional resources consisted of CINAHL, ERIC, MEDLINE, Ovid, PubMed, and Science Direct. Specific keywords used alone or in conjunction with others in these searches included the following: ASD, autism, African American, Black,
minority, function, adaptive, performance, participation, preschool, toddler, and early childhood. The results of this review indicate a need for further studies related to performance and participation of preschool-aged children with ASD from various backgrounds and the possible influence of race and culture.
Discussed in this literature review are the theoretical framework for understanding performance and participation from the perspective of MOHO and ICF. An overview of ASD is also provided, with a focus on prevalence, diagnosis, and symptomology.
Additionally, studies that relate to functional challenges in early childhood are discussed. Below is a review of current literature with a focus on the challenges related to functional performance and participation patterns of individuals with ASD, highlighting the need for further research related to preschool-aged children with ASD from African American backgrounds.
Theoretical Framework
The theoretical frameworks that served as the basis for this study were MOHO and the biopsychosocial model proposed by the WHO for conceptualizing health, disability, and function. MOHO was pioneered by Kielhofner and further developed through collaboration with other professionals (2008). MOHO is a concept for
understanding the performance and participation patterns of individuals with a focus on human occupation. Provided in WHO’s constitution and ICF are concepts related to health and functional impairments that can be applied internationally. Together, these concepts formed the basis for describing participation and performance challenges of individuals with ASD and their influence on adaptive functioning with respect to this mixed methods study.
Model of Human Occupation
MOHO is designed to inform human occupation concerning individual
performance and participation. Kielhofner (2008) described human occupation as being comprised of three distinct areas, which include activities of daily living, productivity, and play. These occupations serve as a means to be actively involved in a task within a particular timeframe and context, allowing for interactions with the environment and others. Thus, occupation is best defined as encompassing “a wide range of doing that occurs in the context of time, space, society, and culture [where] temporal, physical, social, and cultural contexts pose conditions that invite, shape, and inform human occupation (Kielhofner, 2008, p. 5). Human occupations are a unique experience for every individual and are influenced by a multitude of factors that influence the ability to be productive, engage in leisure, and complete various activities of daily living.
Provided in MOHO is an explanation of the motivation, patterning, and
performance factors associated with individual occupations. Human operations occur in various social and physical environments and are inherently comprised of three
components that are interrelated and influence occupational participation: volition, habituation, and performance capacity. “Volition refers to the motivation for occupation,
habituation refers to the process by which occupation is organized into patterns or routines, and performance capacity refers to the physical and mental abilities that underlie skilled occupational performance” (Model of Human Occupational
Clearinghouse, 2013). Volition includes an individual’s values, interests, and personal causation, which is the personal perception of being effective at a task. Habituation occurs as a result of recurrent patterns, such as routines, habits, and personal roles. Performance capacity is dependent on individual skill-based factors related to motor, process, communication, and interaction skills (Boyer et al., 2008). Kielhofner (2008) asserts that human occupations can best be understood through considering the concepts of habituation, volition, performance capacity, as well as environmental contexts.
The environment is comprised of social, cultural, and physical dimensions that either foster or inhibit functional performance and participation (Boyer et al., 2008). It consists of the people, places, and objects with which individuals interact and provides opportunities that support or interfere with an individual’s ability to participate and perform various occupations (Kielhofner, 2008). Included in MOHO are systems theory approaches to aid in describing how the dynamics of human occupations including volition, habituation, and performance capacity were impacted by the interplay of human qualities and environmental factors. Patterns of doing, such as performance and
participation, are all shaped by these interconnected components. As a result,
occupations occurring in a supportive environment with positive outcomes will result in behaviors being repeated. In turn, change and adaptation will occur in response to less favorable results and promote the reshaping and development of new occupational patterns of performance and participation (Kielhofner, 2008). Occupational performance
and participation are continuously being shaped by the dynamics of volition, habituation, performance capacity, and the environment.
Similar to the environment, culture also plays a role in an individual’s
participation and performance of human occupations (Kielhofner, 2008). All components inherent in MOHO and previously discussed are influenced by culture, as individual’s thoughts, actions, roles, and perceptions about their surroundings are molded by culture. “Culture shapes what kinds of abilities are important, what kinds of meanings are tied to actions, what pastimes are enjoyed, and what one should strive after in life” (Kielhofner, 2008, p. 34). As a result, personal customs and beliefs may influence the volitional, habitual, performance capacities, and environmental factors of an individual’s
occupations and functioning within society. Kielhofner (2008) provided through MOHO a construct for determining the various internal and external factors that may influence an individual’s performance and participation.
Research and MOHO. Since the development of MOHO, researchers and
clinicians have applied this model to their studies and clinical practice in an effort to gain insight into participation challenges of individuals with various conditions that negatively affect function. MOHO has been used as a framework for research related to
performance assessment and program development internationally for children and adults, primarily in the areas of mental health and with individuals with various
disabilities (Basu, Jacobson, & Keller, 2004; Bowyer, et al., 2008;Kramer, Kielhofner, Lee, Ashpole, & Castle, 2009). Relating to autism, Restalt and Magill-Evans (1994) used the theoretical basis of MOHO to study challenges with play skills in preschoolers. Prevalent studies utilizing MOHO have been conducted with regards to the clinical utility
of assessments developed for use in practice based on the model (Bowyer, Kramer, Kielhofner, Maziero-Barbosa, & Girolami, 2007; Kramer, et al., 2009). Common assessments used with the pediatric population that appear in research include the Child Occupational Self-Assessment and the Short Child Occupational Profile (Harney & Kramer, 2007; Romero Ayuso, & Kramer, 2009). As a result of such research, clinicians primarily in the field of occupational therapy employ MOHO in practice through clinical reasoning and utilization of related MOHO assessments (Keopenen & Launiainen, 2008; Kielhofner, 2008; Kramer, Bowyer, O’Brien, Kielhofner, & Maziero-Barbosa, 2009).
International Classification of Functioning, Disability, and Health (ICF)
ICF contains definitions for functioning, disability, and health that can be used to understand influential factors related to performance and participation from a
biopsychosocial model (WHO, 2002). The biopsychosocial model is a combination of individual, biological, and social frames of reference for conceptualizing disability and function, which are dependent on interactions between contextual factors and individual factors that affect conditions of health.
Among contextual factors are external environmental factors (for example, social attitudes, architectural characteristics, legal and social structures, as well as climate, terrain and so forth); and internal personal factors, which include gender, age, coping styles, social background, education, profession, past and current experience, overall behavior pattern, character and other factors that influence how disability is experienced by the individual. (WHO, 2002, p. 10) Human functioning is said to be dependent on the interaction at three distinct levels, namely an individual body part or system, the entire person, and the context. Disability
occurs as a result of dysfunction at either one or more of these levels and presents as functional impairments, limitations in activity, and restrictions in participation.
The WHO (2006) aims to present disability as a common feature of existence that everyone has the potential to experience at any given time due to health challenges. According to the World Health Organization, health is defined as follows:
a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity… Healthy development of the child is of basic importance [and] the ability to live harmoniously in a changing total environment is essential to such development.” (WHO Constitution, p. 1, 2006).
As such, individuals with disabilities like ASD may present with health impairments as they struggle with development and optimal functioning in their environment due to internal and external challenges. Difficulties with performance and participation may negatively influence an individual with ASD’s ability to engage with others and the environment, as well as one’s overall ability to function and experience healthy development.
Research and ICF. ICF has been used in various research studies, alongside
public policy initiatives and clinical practice, to provide a conceptual framework for discussing and determining functional abilities and challenges (Björck-Åkesson et al., 2010; Francescutti et al., 2009; WHO, 2010). Additionally, it has been used as a systematic means for data collection at the population level related to disability,
functioning, and participation across cultures and countries (WHO, 2013). In 2006, ICF for Children and Youth (ICF-CY) was developed to help with the application of a universal terminology related to infancy through adolescence, being recommended to
merge back into ICF in 2010 (WHO, 2007; WHO, 2012). Since then, ICF-CY has been used to assess the functional and participation challenges of children across multiple contexts (Adolfson, Malmqvist, Pless, & Granlund, 2011; Coster et al., 2011;
Ibragimova, Granlund, & Bjorck-Akesson, 2009; Simeonson, 2009). Recently,
researchers have used ICF framework to specifically study the challenges of individuals with ASD, demonstrating the validity of its use with this population (Gan, Tung, Yeh, Chang, & Wang, 2014; Gan, Tung, Yeh, & Wang, 2013; Poon, 2011). An overview of ASD, including functional challenges and diagnostic criteria identified through recent research, appears below.
Overview of Autism Spectrum Disorders
Autism Spectrum Disorder (ASD) is a developmental disability that negatively affects social participation, communication, and behavioral functioning, with differing degrees of impairments exhibited by affected individuals (APA, 2013b; CDC, 2014). ASD is prevalent in individuals of various races and socioeconomic groups, being diagnosed in 1 in 68 children and noted to occur 5 times more frequently in boys (CDC, 2014). In May 2013, the American Psychiatric Association (APA) published new diagnostic criteria for ASD in the revised DSM-5 to clarify the diagnosis of ASD (APA, 2013a). Under the previous edition, individuals were diagnosed as having any of the
following four disorders: Autistic Disorder, Asperger’s Disorder, Childhood Disintegrative
Disorder, or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). With the updated DSM-5, changes were made to eliminate sub-classifications under the autism spectrum and allow for one uniform diagnosis of ASD (APA, 2013a). For individuals
who previously had a well-substantiated diagnosis under the former DSM, they should be given the new diagnosis of ASD.
Diagnostic Criteria for ASD
The most recent DSM-5 now includes one diagnostic category for ASD, with the reclassification of other related conditions (APA, 2013a). Those with known genetic and medical conditions, such as Rett Syndrome and Fragile X, are categorized as their own disorder. The use of PDD-NOS and Asperger’s Disorder were eliminated and
consolidated under the ASD category. Additionally, those individuals who do not meet the criteria for ASD and have challenges with using verbal and nonverbal communication socially are now diagnosed under Social Communication Disorder (APA, 2013b).
Professionals are encouraged to consider the degree to which an individual exhibits such difficulties that meet the above noted symptomology and determine the most appropriate diagnosis, whether ASD or a better suited one.
For an individual to be diagnosed with ASD, they must demonstrate deficits primarily in social communication and interaction, as well as exhibit restricted repetitive behaviors, interests, and activities (APA, 2013b). Social impairments must be present across multiple contexts and may include non-verbal and verbal behaviors, challenges with social interactions and relationships, and difficulties with situational
appropriateness. Restricted and repetitive behaviors now encompass a sensory component, where maladaptive and hyper- or hypo-responsiveness to environmental stimuli and sensory input are considered. Additionally, stereotyped movements, rigidity in routines, ritualistic behaviors, and restricted interests are behaviors that must be
to have been present during early development and not be a result of global
developmental delays or intellectual disability (APA, 2013b). The above-described symptomology for ASD should result in significant impairments that affect occupational, social, and overall functioning.
In addition to symptoms, severity levels for the degree to which an individual’s functioning is impaired is now included in the DSM-5 (APA, 2013a). Severity levels range from level 1 to 3, with each providing specific examples as to the degree of support required. Level 1 implies minimal functional impairment regarding social
communication and restricted, repetitive behaviors, where an individual may have verbal abilities, but demonstrate atypical social overtures and behavioral inflexibility in one or more contexts. Level 2 includes marked impairments with verbal and non-verbal communication and frequent behavior challenges that impede functioning, resulting in the need for substantial support. Challenges described in Level 3 imply the most significant amount of support required because of severe impairments in social communication and behaviors (APA, 2013b). By providing such criteria related to severity levels, it may help in understanding the degree to which an individual’s functioning in impaired as a result of a uniform diagnosis of ASD (APA, 2013a).
With the changes to diagnostic criteria for ASD, there is a proposed benefit of a more accurate description of the symptoms that should be present and the degree to which functioning is impaired (APA, 2013a). Symptoms can now be viewed on a continuum, with accompanying severity levels as to the manner in which social
communication and interaction, as well as restrictions in participation, require different degrees of support. Criticism has been expressed regarding the recent changes, with
some voicing concerns of individuals losing their current diagnoses, as well as discontinuation of access to needed services (APA, 2013a; Wing, Gould, & Gillberg, 2011). As a result, the DSM-5 is recommended in conjunction with other screening and diagnostic measures to determine a diagnosis of ASD from a global and holistic
perspective (APA, 2013a; APA, 2013b).
Diagnostic Assessment of ASD
The diagnosis of children suspected of having ASD can be a difficult process, as professionals seek to rule out other co-occurring symptoms and determine a diagnosis that allows a child and family to access the services they need (Close, Lee, Kaufmann, & Zimmerman, 2012; Ennis-Cole et al., 2013). Additionally, developmental, neurological, and psychiatric problems often co-exist in individuals with ASD, such as intellectual disabilities, sensory processing difficulties, speech and language difficulties, motor skill deficits, epilepsy, and anxiety disorders. It is critical for professionals to know the early signs of ASD, as well as consider related disorders and cultural factors (Close et al., 2012; Zwaigenbaum et al., 2009). It is recommended that diagnosis be a comprehensive process, considering multiple forms of data sources and information, while also
exercising cultural sensitivity (Ennis-Cole et al., 2013; Matson et al., 2011). There are various resources available through the Centers for Disease Control, as well as other professional trainings, to assist professionals in developing competency in identifying the early signs of ASD (CDC, 2013; Boyd et al., 2010).
Professional practitioners use a variety of assessments to assist in the screening and diagnostic process for identifying ASD and can reference professional resources to help foster their skills for early detection of ASD (Boyd et al, 2010; Reszka, Boyd,
McBee, Hume, & Odom, 2014). Early screenings before and around 18 months of age, as well as at 24 months, are recommended in efforts to allow for early implementation of services (Barton, Dumont-Mathieu, & Fein, 2012). Common screeners used in early identification of ASD include the following: Checklist for Autism in Toddlers (CHAT) Modified Checklist for Autism in Toddlers (M-CHAT), Quantitative Checklist for Autism in Toddlers (QCHAT), Baby and Infant Screen for Children with Autism Traits (BISCUIT), First Year Inventory (FYI), Screening Tool for Autism in Two-Year Olds (STAT), and Communication and Symbolic Behavior Scales Developmental Profile (CSBSDP. For comprehensive diagnostic purposes, practitioners often use the following caregiver questionnaires and observational measures: Autism Diagnostic Observation Schedule (ADOS), Autism Diagnostic Interview-Revised (ADI-R), Childhood Autism Rating Scale (CARS), and Social Responsiveness Scale (SRS), Repetitive Behavior Scale-Revised (RBS-R), and Child Behavior Checklist (CBCL) (Boyd et al., 2010; Matson et al, 2011; Zwaigenbaum et al., 2009). Using various screening and assessments tools, practitioners can assess an individual’s skills and help to make an early diagnosis for access to early intervention services.
Age of ASD Diagnosis and Disparities
A diagnosis of ASD can be made by the second year of life, with early intervention being critical during this period to address the core deficits in social, communication, and adaptive functioning skills (Chawarska et al. 2009; Rogers 2009). Following a review of studies published from 1990 to 2012, Daniels and Mandell (2014) reported the mean age for diagnosis for ASD to range from 38 to 120 months, with a noted decrease across time. Researchers have reported that parents may even begin
noticing symptoms as early as 6 to 8 months of age, with diagnosis between the ages of 1 and 3 becoming the standard (Mandell et al., 2010; Matson, Beighley, & Turygin, 2012; Valicenti-McDermott et al., 2012). Some identified factors associated with earlier diagnosis include higher socioeconomic status, greater severity of symptoms, and previous familial interactions with educational and health systems (Daniels & Mandell, 2014).
In spite of the campaigns and initiatives for the early identification of ASD, disparities exist with some populations being misdiagnosed or receiving a diagnosis at later ages (Ennis-Cole et al., 2013; Valicenti-McDermott, et al., 2012). Although there is no reported difference in clinical characteristics and exhibited symptomology based on ethnicity or socioeconomic status, individuals from minority groups have been found to receive their diagnosis at later ages (Ennis-Cole et al., 2013; Mandell et al., 2009). Children of Hispanic and African American backgrounds have been found to be more likely to receive their diagnosis of ASD after the age of 4, even after adjusting for various demographic factors related to education, insurance, and family history. Additionally, children who are born in another country or were born to foreign-born parents are reportedly referred for evaluations later (Valicenti-McDermott et al., 2012). With the disparities in referrals for assessment and later age for receiving an ASD diagnosis, it is important for practitioners to consider the influence race and culture may have on this process and potential differences in participation and performance challenges. Below is a discussion of recent studies that identify challenges faced by individuals with ASD, with further emphasis on the early childhood years.
ASD and Adaptive Functioning Challenges in Early Childhood
According to ICF (WHO, 2002), an individual’s ability to function and participate are affected by a variety of factors, including personal and environmental contributors. Similarly, Kielhofner (2008) proposed with MOHO that participation and performance could be affected by volitional, habitual, capacities for performance, and contextual factors. As a result, children with ASD present with challenges that negatively affect their ability to function in the home, school, and community settings due to individual
capacities and environmental factors. Researchers have conducted studies to explore the participation and performance challenges encountered by individuals with ASD, as well as the influence this may have on parenting and family dynamics. It has been found that raising an individual with functional impairments as a result of having an ASD can negatively influence the family dynamics and increase parental stress (Estes et al., 2009; Myers, Mackintosh, & Goin-Kochel, 2009; Rao & Beidel, 2009). Additionally,
participation in age-appropriate activities, such as school, family gatherings, and
community outings, also poses challenges due to difficulties with communication, social participation, motor skills, cognitive abilities, adaptive behavior, and sensory processing difficulties (Fournier, Hass, Naik, Lodha, & Cauraugh 2010; Lane, Young, Baker, & Angley, 2010; LaVasser & Berg, 2011). Below is a discussion of recent studies highlighting the reported difficulties in early childhood of individuals with ASD as it relates to adaptive functioning.
Overview of Adaptive Functioning Challenges
Participation is described by the WHO (2002) as being essential for development and consists of involvement in life experiences. With participation being impacted by
personal and environmental factors (Kielhofner, 2008; WHO, 2002), individuals with ASD are said to have difficulties with communication, social interaction, and restricted repetitive behaviors, interests, and activities (APA, 2013b). Researchers have explored these constructs to further define functional difficulties encountered by individuals with ASD and identify interventions to help improve upon those challenges encountered with adaptive functioning. Adaptive functioning, also referred to as adaptive behavior or skills in the literature, consists of those skills necessary for an individual to function in
everyday activities, such as communication, social interaction, self-help, and overall independence with age-appropriate tasks (Perry et al., 2009; Paul et al., 2014). Age, cognitive level, behavior, sensory processing, and symptom severity are variables that reportedly influence participation and performance with adaptive functioning (Lane et al., 2010; Paul et al., 2014).
Little research currently exists that considers the relationship between adaptive functioning in the preschool-age population and other variables, including age, symptom severity, and cognitive abilities (Perry et al., 2009). As children are being diagnosed with ASD at younger ages, it is critical that researchers begin to focus on adaptive functioning difficulties in the toddler and preschool-age population in order to determine challenges and progress with participation and performance over time. Acquiring adaptive skills in early childhood may be one of the most import goals during this time, as they serve the foundation for independent functioning and are based on communication, socialization, motor, and self-care skills (Oakland & Algina, 2011). The American Association on Intellectual and Developmental Disabilities (2013) recommends measuring adaptive
functioning based on conceptual, practical, and social skills essential for performance in everyday activities. These skills are defined as follows:
1. Conceptual skills: language and literacy; money, time, and number concepts; and self-direction.
2. Social skills: interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules/obey laws and to avoid being victimized.
3. Practical skills: activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone. (American Association on Intellectual and Developmental Disabilities [AAIDD], 2013, para. 4)
Various assessments are currently available to professionals to identify adaptive functioning skills exhibited in early childhood.
Standardized assessments used to determine an individual’s adaptive functioning include measurement of the domains recommended by the AAIDD, with Vineland Adaptive Behavior Scales (VABS), Adaptive Behavior Assessment System (ABAS), and Behavior Assessment System for Children (BASC) being most common. Across studies, the VABS is the most popular adaptive functioning assessment used (Lopata et al., 2013). Parents, caregivers, and teachers are instrumental in providing information on a child’s daily functioning and are often asked to complete these assessments. Using these assessments, adaptive functioning difficulties have been noted in early childhood, with there being a continuing challenge with these skills as a child progresses in age
reported through cross-comparison analysis of the VABS, ABAS, and BASC. Their findings indicated that children with high functioning ASD had significant discrepancies between their IQ and adaptive functioning, tended to have higher reported adaptive composite scores based on the VABS, and higher adaptive social scales on the BASC. They found that the ABAS was more sensitive in determining adaptive skill challenges in comparison to the other measures. As a result, a comprehensive assessment is critical that involves both observation and caregiver report to yield a more accurate picture of a child’s adaptive functioning abilities and encountered difficulties.
Perry et al. (2009), building upon earlier studies in the area of adaptive
functioning, have identified profiles of children with ASD related to cognitive abilities and adaptive functioning based on the VABS, highlighting the variance in previous studies. Their findings of children under the age of 6 indicated that individuals with ASD having severe and profound cognitive impairments presented with adaptive functioning above their cognitive scores. In contrast, children with less severe cognitive impairments presented with adaptive functioning abilities significantly lower than their cognitive age equivalents. As a result, Perry et al. have suggested a pattern for an “autism profile” based on the domains measured on the VABS related to age equivalents, where “Motor is highest, followed by Daily Living and Communication (except in the two highest
functioning groups), and then Socialization lowest” (p. 1072). Higher functioning children with ASD exhibited a profile where communication skills were highest,
followed by motor skills and daily living skills respectively, with socialization being the lowest. Autism severity levels reportedly had a significant impact on adaptive
challenges. Additionally, variance in adaptive functioning was noted and attributed to developmental level and age.
Similarly, Kanne et al. (2011) described a profile of functioning in children with ASD based on functional outcomes. Their study consisted of 1,089 verbal individuals with ASD who were classified as “high functioning,” ranging in age from 4-17 with cognitive abilities in the average range for verbal and nonverbal skills. Kanne et al. found that as a child increased in age, so did the degree of impairment with adaptive functioning in comparison to their mental age. Increases in intellectual functioning were positively correlated with increased adaptive functioning, although the strength of such results was less predictive with interpersonal relationship and language responsivity skills. Of importance was the poor association with adaptive behavior and severity of autism symptoms based on clinical observation, whereas stronger associations were noted based on parental report. Parents indicated increased challenges with socialization skills and social communication as a result of increased severity in symptomatology, although this pattern may diminish with increasing age. Overall, the greatest degree of impairment was related to socialization skills, with moderate delays in activities of daily living and communication.
In addition to the core deficit areas of communication and social interaction, sensory processing difficulties have also been identified in individuals with ASD, with researchers reporting challenges with adaptive behavior as a result (Lane et al. 2010; O’Donnell, Deitz, Kartin, Nalty, & Dawson, 2012). Included in the Diagnostic Classification of Mental Health and Development Disorders of Infancy and Early Childhood: Revised Version (Zero to Three, 2005) are aberrant responses to sensory
stimuli that fall under the diagnosis of Regulation Disorders of Sensory Processing (RDSP). Three categories exist within the diagnosis of RDSP: hyper-responsive, hypo-responsive, and sensory seeking/impulsivity. In the current DSM-V, irregular sensory responses, such as atypical interests in sensory features of the environment and hyper-or hypo-reactivity to stimuli, are now considered when making a diagnosis of ASD
(DSM-V, 2013). As a result of sensory processing disorders, an individual may lack awareness
of, seek excessive opportunities to interact with, or respond negatively to certain environmental stimuli. These may include certain sounds, visual stimuli, tactile experiences, olfactory stimuli, oral input, proprioception, and vestibular input (Lane et al., 2014; Reynolds, Bendixen, Lawrence, & Lane, 2011). Challenges with sensory processing related to avoidance, seeking, or poor awareness have resulted in difficulties with self-regulation, which negatively affects adaptive functioning (Brock et al., 2012; Hazen, Stornelli, O’Rourke, Koesterer, & McDougle, 2014; Lane et al., 2010; O’Donnell et al., 2012).
The findings of researchers regarding functional profiles of individuals with ASD and the challenges with adaptive functioning can be beneficial to practice. It is
documented that individuals with ASD may present with adaptive functioning challenges in the areas of communication, social interaction, behavior challenges, and sensory processing (Brock et al., 2012; Lane et al., 2014; Kanne et al., 2011; Perry et al., 2009). Additionally, they may present with varying profiles of sensory responsivities and temperament due to numerous factors, including development, behavior, and cognitive abilities (Baranek et al., 2006; Hepburn & Stone, 2006; Hilton et al., 2010; Watson et al., 2011). However, caution should be used with these results due to variance from
